Bickel Et Al 2016 Defining High Quality Palliative Care in Oncology Practice An American Society of Clinical Oncology

Original Contribution CARE DELIVERY
The full version of this article Defining High-Quality Palliative Care in Oncology Practice: An
may be viewed online at
jop.ascopubs.org American Society of Clinical Oncology/American Academy of
Hospice and Palliative Medicine Guidance Statement
Kathleen E. Bickel, MD, MPhil, Kristen McNiff, MPH, Mary K. Buss, MD, MPH, Arif Kamal, MD, MHS, Dale Lupu, MPH, PhD,
Amy P. Abernethy, MD, PhD, Michael S. Broder, MD, Charles L. Shapiro, MD, Anupama Kurup Acheson, MD,
Jennifer Malin, MD, PhD, Tracey Evans, MD, and Monika K. Krzyzanowska, MD, MPH
White River Junction VA Medical Center; QUESTION ASKED: What are the specific elements of basic “primary palliative care” that general
Geisel School of Medicine at Dartmouth, medical oncology practices in the United States should be reasonably expected to provide for adult
White River Junction, VT; Dana-Farber
patients with advanced cancer or high symptom burden?
Downloaded from ascopubs.org by 191.223.74.154 on February 24, 2024 from 191.223.074.154
Cancer Institute; Beth Israel Deaconess

Medical Center, Boston, MA; Duke
University Medical Center, Durham, NC; SUMMARY ANSWER: The panel endorsed a substantial proportion (598 of 966 [62%]) of
Copyright © 2024 American Society of Clinical Oncology. All rights reserved.
American Academy of Hospice and specific palliative care service items. Three hundred forty-seven items (36%) fell into the Uncertain
Palliative Medicine, Glenview, IL; category, and 21 items (2%) were excluded. Oncology providers wishing to enhance palliative care
Partnership for Health Analytic Research,
delivery may find this information useful to inform operational changes and quality improvement
Beverly Hills, CA; Mt Sinai Ichan School of
Medicine, New York, NY; Providence Cancer efforts.
Center, Portland, OR; Anthem, Indianapolis,
IN; Abramson Cancer Center of the WHAT WE DID: An expert steering committee created a list of 966 palliative care service
University of Pennsylvania, Philadelphia, items in nine domains, describing elements of palliative care for oncology patients. Thirty-one
PA; and Princess Margaret Cancer Centre,
multidisciplinary panelists then used modified Delphi methodology to rate these items
Toronto, Ontario, Canada
according to three separate constructs: importance, feasibility, and scope of medical
Corresponding author: Kathleen E. Bickel,
oncology practice.
MD, MPhil, White River Junction VA Medical
Center, 215 N Main St, Mail Code GEC 003,
White River Junction, VT 05091; e-mail: WHAT WE FOUND: Domains with the highest proportion of items endorsed (Include
kathleen.bickel@outlook.com. category) were End-of-Life Care (81%); Communication and Shared Decision Making
Disclosures provided by the authors are (79%); and Advanced Care Planning (78%). The lowest proportions were in Spiritual and
available with this article at Cultural Assessment and Management (35%) and Psychosocial Assessment and Management
jop.ascopubs.org. (39%). In the largest domain, Symptom Assessment and Management, there was consensus
that all symptoms should be assessed and managed at a basic level, with more comprehensive
management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain.
Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that
oncology practices should be able to describe the difference between palliative care and
hospice to patients and refer patients appropriately.
BIAS, CONFOUNDING FACTOR(S), REAL-LIFE IMPLICATIONS: Despite the panel size and a
rigorous attempt to compose a representative panel, one third of the panelists self-identified as
both medical oncologists and palliative care physicians. As they were not a majority, this group
could not completely influence the Include category because it required a median rating of
7 to 9 without disagreement in all three constructs. However, this group likely made it more
difficult to completely exclude certain items, thereby creating a larger Uncertain category. In
addition, the panel was not asked to endorse any standardized tools, prioritize areas for
improvement, or suggest performance benchmarks, which would be useful for further implementation.
Lastly, with only US-based panelists, these findings cannot be generalized elsewhere. Our findings
demonstrate that primary palliative care continues to be essential for all medical oncology clinicians
caring for seriously ill patients, despite variation in settings and resources. This statement represents
the first clearly itemized consensus definition of what elements should be a part of primary palliative
DOI: 10.1200/JOP.2016.010686; care delivery within medical oncology practice in the United States. Because of the wide range of
published online ahead of print at oncology practice settings and resources, the intent is to allow practices flexibility in choosing
jop.ascopubs.org on August 16, 2016.
Copyright © 2016 by American Society of Clinical Oncology Volume 12 / Issue 9 / September 2016 n jop.ascopubs.org 821
Bickel et al
improvement areas based on local context, feasibility, and interest. No one specific area has been prioritized, no benchmarks have been set or
recommended, and no mandates have been proposed, because the evidence is still lacking. However, we hope that this statement will serve
as a starting point—along with appropriate education, evaluation, and reimbursement models—toward operationalizing and improving
primary palliative care delivery in medical oncology practice.
822 Volume 12 / Issue 9 / September 2016 n Journal of Oncology Practice Copyright © 2016 by American Society of Clinical Oncology
Original Contribution CARE DELIVERY
Defining High-Quality Palliative

Care in Oncology Practice: An
American Society of Clinical
Oncology/American Academy of
Hospice and Palliative Medicine
Guidance Statement
Kathleen E. Bickel, MD, MPhil, Kristen McNiff, MPH, Mary K. Buss, MD, MPH,
Arif Kamal, MD, MHS, Dale Lupu, MPH, PhD, Amy P. Abernethy, MD, PhD,
Michael S. Broder, MD, Charles L. Shapiro, MD, Anupama Kurup Acheson, MD,
Jennifer Malin, MD, PhD, Tracey Evans, MD, and Monika K. Krzyzanowska, MD, MPH
White River Junction VA Medical Center;
Geisel School of Medicine at Dartmouth,
White River Junction, VT; Dana-Farber
Abstract
Cancer Institute; Beth Israel Deaconess
Medical Center, Boston, MA; Duke
University Medical Center, Durham, NC;
American Academy of Hospice and Purpose
Palliative Medicine, Glenview, IL; Integrated into routine oncology care, palliative care can improve symptom burden, quality
Partnership for Health Analytic Research, of life, and patient and caregiver satisfaction. However, not all oncology practices have
Beverly Hills, CA; Mt Sinai Ichan School of
access to specialist palliative medicine. This project endeavored to define what constitutes
Medicine, New York, NY; Providence Cancer
Center, Portland, OR; Anthem, Indianapolis, high-quality primary palliative care as delivered by medical oncology practices.
IN; Abramson Cancer Center of the Methods
University of Pennsylvania, Philadelphia,
PA; and Princess Margaret Cancer Centre,
An expert steering committee outlined 966 palliative care service items, in nine domains,
Toronto, Ontario, Canada each describing a candidate element of primary palliative care delivery for patients with
Editor’s Note: Guidance statements are advanced cancer or high symptom burden. Using modified Delphi methodology, 31
intended to serve as a resource to direct multidisciplinary panelists rated each service item on three constructs: importance,
practice and research. Adherence to any feasibility, and scope within medical oncology practice.
guidance statement is voluntary, the items
recommended are not clinical guidelines or Results
mandates. It is the responsibility of the Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-
treating physician or other health care Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning
provider, relying on independent
experience and knowledge of the patient,
(78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%)
to determine the best course of treatment and Psychosocial Assessment and Management (39%). In the largest domain, Symptom
of the patient. Guidance statements are Assessment and Management, there was consensus that all symptoms should be assessed and
not continually updated and may not managed at a basic level, with more comprehensive management for common symptoms such as
reflect the most recent evidence.
nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice
Referral domain, there was consensus that oncology practices should be able to describe the
ASSOCIATED CONTENT difference between palliative care and hospice to patients and refer patients appropriately.
Data Supplement DOI: 10.1200/JOP. Conclusion
2016.010686 This statement describes the elements comprising high-quality primary palliative care for
DOI: 10.1200/JOP.2016.010686;
patients with advanced cancer or high symptom burden, as delivered by oncology
published online ahead of print at practices. Oncology providers wishing to enhance palliative care delivery may find this
jop.ascopubs.org on August 16, 2016. information useful to inform operational changes and quality improvement efforts.
e828 Volume 12 / Issue 9 / September 2016 n Journal of Oncology Practice Copyright © 2016 by American Society of Clinical Oncology
Primary Palliative Care in Oncology
INTRODUCTION form a project steering group. The project goal was to use a
Integrating specialist palliative care into routine cancer care formal consensus process to define what elements currently
can lead to better patient and caregiver outcomes, including constitute reasonably expected, high-quality palliative care
improvement in symptoms, quality of life, satisfaction, delivery in US medical oncology practices for adult patients
caregiver burden, and survival.1-9 However, studies also with advanced cancer or high symptom burden, hereafter
indicate that palliative care delivery in medical oncology referred to as primary palliative care in medical oncology
practice requires improvement.10,11 Consequently, ASCO (Fig 1). Specifically, we aimed to (1) create an actionable
and others recommend integrating palliative care early resource for improving the quality of palliative care pro-
into the usual care of patients with advanced cancer or vided in medical oncology practices; (2) build a foundation
high symptom burden.1,3,12-15 Although specialist pallia- on which future palliative care–related quality measures,
tive care teams deliver care focused on symptoms, care quality improvement initiatives, and educational activities
planning, and quality of life, it is not feasible for all patients could be constructed; and (3) identify areas of uncertainty
with cancer to be cared for by these teams.11,16,17 On- to stimulate conversation among both disciplines.
cologists and their clinic teams remain the primary pro-

viders of palliative care for the majority of patients with METHODS
cancer in the United States,11 and ASCO has long recog- We used the RAND/UCLA-modified Delphi process22 to
nized and acknowledged the aspects of palliative care develop consensus on which elements of palliative care
inherent in oncology practice.3,12-14,18 A distinction be- should be provided within medical oncology practices
tween primary palliative care (ie, skills that all clinicians in the United States to deliver high-quality primary
should have) and specialist palliative care has been de- palliative care.
scribed by many,17,19-21 but the exact elements of primary
palliative care in medical oncology practice have not Steering Group and Project Structure
been defined. To improve primary palliative care delivery, The steering group (authors) consisted of representatives
medical oncology practices require guidance, practical from ASCO’s Quality of Care, Clinical Practice, Clinical
resources, and assistance in overcoming barriers. Practice Guidelines, and Survivorship Committees; repre-
To develop more detailed guidance, ASCO representa- sentatives from AAHPM; and an impartial process expert.
tives partnered with representatives from the American This group adapted previously published frameworks1,23 to
Academy of Hospice and Palliative Medicine (AAHPM) to create the project’s scope and structure, resulting in nine
domains: Symptom Assessment and Management, Psycho-
social Assessment and Management, Spiritual and Cultural
Assessment and Management, Communication and Shared
Decision Making, Advance Care Planning, Appropriate Pal-
liative Care and Hospice Referral, Coordination and Conti-
Specialist Specialist nuity of Care, Carer Support, and End-of-Life Care. Scope was
Palliative Oncology
Care Care
limited to US adult patients with advanced cancer or high
symptom burden, in concordance with the ASCO provisional
clinical opinion regarding integration of palliative care into
oncology care.3
Primary Palliative Care in Medical Oncology Delphi Panelists

Project Aim: Develop stakeholder consensus regarding which palliative Professional organizations, including state medical oncology
care elements currently constitute reasonably expected,
high-quality primary palliative care delivery in US medical oncology societies, the Oncology Nursing Society, the Association of
practices for adult patients with advanced cancer or high symptom
burden.
Oncology Social Work, as well as oncology patient advocate
groups (to represent the patient perspective), were approached
FIG 1. Conceptual model of the project aim: Defining high-quality primary to nominate individuals to participate in the panel. The goal was
palliative care in medical oncology. to have experts representing medical oncology practice from
Copyright © 2016 by American Society of Clinical Oncology Volume 12 / Issue 9 / September 2016 n jop.ascopubs.org e829
Bickel et al
different regions, practice types, and practice sizes. Although oncology care (1 = not important, 9 = essential), the feasibility
chaplains play an important role in the provision of palliative of doing so (1 = infeasible, 9 = definitely feasible), and whether
care, they are not common members of medical oncology it was reasonable (within scope) to expect medical oncology
practices, and thus were not included as panel members. To practices caring for patients with advanced cancer and/or high
avoid academic bias, there was no publication requirement symptom burden to provide the service (1 = extremely unrea-
for panelists. sonable, 9 = extremely reasonable).
The resulting 31-member multidisciplinary panel was
larger than standard Delphi methodology panel size (nine to 12 Delphi Process and Analysis
members); however, the steering group considered adequate Panelists participated in an introductory webinar, followed by a
stakeholder engagement to be essential. Twenty-two members pilot round, to gauge panelists’ understanding of the con-
were physicians, self-identified as palliative care (n = 1), structs and the rating process. Clarifications and definitions
medical oncology (n = 10), or medical oncology and palliative (Data Supplement) were reviewed before the first full round.
care (n = 11). Years of board certification ranged from 3 to Panelists received summarized results of the first round of ratings,
35 years for medical oncology (average, 17.8 years) and from 1 followed by a face-to-face meeting conducted by a professional
to 5 years for palliative care (average, 3.2 years), because 2008 facilitator without ties to oncology or palliative care (M.S.B.). The
was the first year the current palliative care board examination meeting discussion focused on the service items with a composite
was offered. The other nine members were patient advocates rating of Uncertain and areas of disagreement. Afterward, pan-
(n = 3), social workers (n = 2), nurses (n = 2), and nurse elists rerated the service items using the same three constructs.
practitioners (n = 2). Physicians were either in academic For analysis, we made an a priori decision to modify
practice (n = 8), hospital-based practice (n = 5), or private standard Delphi methodology definitions of agreement and
practice (n = 9). Represented practices were located across the disagreement,22 accounting for the larger panel size. Dis-
United States and Puerto Rico (64% urban, 36% suburban), agreement was defined to exist when at least six panelists rated
with staff sizes ranging from four to 2,500 people. Steering the service item in the top one third of a construct scale (7, 8, or
group members did not participate in the Delphi process. 9) and at least six panelists rated the same service item in the
bottom one third of the same construct scale (1, 2, or 3);
Development of Rating Document agreement was considered high when a service item had a
Content experts in the steering group reviewed the results of a median rating of 7 to 9 without disagreement (or a median
literature search and developed a comprehensive list of 966 of 1 to 3 without disagreement).
palliative care service items, reflecting the array of palliative A composite rating across all three constructs was also
care services that should be available in the health care system created for each service item, with each categorized as Include
for patients with advanced cancer or significant symptom (ie, reasonably within the scope of practice), Uncertain, or
burden. The steering group did not preliminarily remove any Exclude(ie,typicallybeyondthescopeofpractice).Service items
service items potentially inappropriate for medical oncology were in the Include category if the median was 7 to 9 for all three
practice. Furthermore, when appropriate, multiple items were constructs (importance, feasibility, and scope) without dis-
developed to capture implementation distinctions, such as agreement,inthe Excludecategory if themedianwas 1 to3 forall
method or frequency, within the same palliative care service three constructs without disagreement, and called Uncertain
(eg, pain assessment using a standardized scale at every clinical otherwise. All classifications (eg, agreement, disagreement,
encounter v only as needed). Within each domain, service Include, Exclude, and Uncertain) and summary statistics
items were further grouped into the following subcategories of (ie, medians and standard deviations) were summarized de-
patient care and clinical practice: Patient Assessment and scriptively for pilot-, first-, and second-round responses. All
Evaluation, Education and Management, Practice Manage- data and statistical analyses were performed using SAS version
ment, Referral, and Evaluation of Clinic Processes. 8.2 (SAS Institute, Cary, NC).
Three separate constructs, each on a scale from 1 to 9,
were developed for panelists to rate each service item (Data RESULTS
Supplement). The constructs were related to the impor- Figure 2 summarizes the final composite ratings. Detailed
tance of delivering the service as part of high-quality medical results are presented in the Data Supplement. Overall, 62%
Percentage of Palliative Care Service Items (per domain)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
End-of-Life Care 81%

(n = 57) 19%
Communication and 79%

Shared Decision Making 19%
(n = 91)
78%
Advance Care Planning 16%
(n = 67)
Appropriate Palliative 69%

Palliative Care Domains
Care and Hospice Referral 24%

(n = 42)
Symptom Assessment 65%

and Management 34%
(n = 395)
56%
Carer Support 41%
(n = 95)
Coordination and 48%

Continuity of Care 48%
(n = 48)
Psychosocial Assessment 39%

and Management 59% Composite Rating
(n = 103)
Include
Uncertain
Spiritual and Cultural 35%
Exclude
Assessment and Management 60%
(n = 68)
FIG 2. Distribution of palliative care service items by domain and by composite rating category, rank ordered by percentage of service items with an Include
composite rating.
(n = 598) of the 966 palliative care service items were compositely Domain 1: Symptom Assessment and Management
rated as Include, 2% (n = 21) as Exclude, and the remainder fell This was the largest section, with 395 service items divided into 22
into the Uncertain category. The distribution of composite ratings different symptom-related categories (Table 2). The percent-
varied by domain. For example, the majority of service items in age of service items rated as Include ranged from 100% for
the End-of-Life Care domain were rated as Include, compared nausea/vomiting and diarrhea to 23% for items related to
with the Spiritual and Cultural Assessment and Management general depression and anxiety. Panelists agreed that in this
domain, where most items were rated as Uncertain. patient population (ie, those with advanced cancer or high
Table 1 provides examples of the palliative care service items symptom burden), a general symptom assessment using a
considered to be within the scope of medical oncology practice validated quantitative instrument should be conducted at least
(Include), beyond the scope of medical oncology practice (Ex- monthly. Practices should also perform the following: (1) educate
clude), and those in between (Uncertain), based on each service patients about the cause and management of existing symp-
item’s composite rating. Given the extent of data, in this section toms, (2) instruct patients how and when to contact the clinic
we describe representative service items from each domain, during and after hours for new or worsening/poorly controlled
focusing on those with an Include composite rating. The majority symptoms, and (3) assess the effectiveness of adjusted medi-
of Exclude service items focused on standardized patient as- cation by the next clinical encounter. All symptoms should be
sessments at regular time intervals (eg, every visit). assessed and managed at a basic level, with more comprehensive
Bickel et al
Table 1. Example of Palliative Care Service Items in Each Palliative Care Domain by Composite Rating Category
Composite Rating Category
Palliative Care Domain Include (within scope) Uncertain Exclude (not within scope)
1. Symptom Assessment/ • Systematically assess for pain using • Treat a patient with moderate to severe • Have all patients receiving
Management a validated quantitative instrument at uncomplicated pain, who is using medical opiates sign opiate
every clinical encounter marijuana, with opioids agreements
2. Psychosocial • Obtain a basic psychosocial history at • Assist with applications for insurance • Obtain patient feedback
Assessment/ initial clinical encounter (eg, Medicare, Medicaid) regarding clinic process of
Management assessing and managing
psychosocial issues using
a standardized form at every
clinical encounter
3. Spiritual and Cultural • Assess and record current faith group, • Perform screening for possible spiritual • Obtain patient feedback
Assessment/ if any, in medical record issues regarding clinic process of

Management assessing and managing
spiritual and cultural issues
using a standardized form at
every clinical encounter
4. Communication and • Determine patient/family understanding • Discuss potential cost to patient/family of • Obtain patient feedback
Shared Decision of prognosis any potential treatment, acknowledging regarding clinic process of
Making the effects that cost may have on family communication and shared
finances and future plans* decision making using
clinical encounter
5. Advance Care Planning • Explain the difference between “code • Complete the advance care planning • Assess for changes/updates to
status” and an advance directive process before starting any cancer- advance care plan at every visit
directed treatments
6. Coordination and • Communicate current prognosis to • Have a clinic protocol on when to refer • Obtain family/surrogate
Continuity of Care primary care patient back to primary care feedback regarding clinic
process of coordination and
continuity of care using
clinical encounter
7. Appropriate Palliative • Assess patient’s need for hospice referral • Refer patient to palliative care if you would • Obtain patient feedback
Care and Hospice at time of diagnosis of incurable “not be surprised if the patient died in the regarding clinic process of
Referral malignancy next 12 months” palliative care and hospice
referral using a standardized
form at every clinical encounter
8. Carer Support • Assess family/caregiver for distress (when • Assess distressed family/caregiver for • Obtain family/caregiver
he or she accompanies patient to clinical causes of distress feedback regarding clinic
encounter) process of family/caregiver
support using a standardized
form at every clinical encounter
9. End-of-Life Care • Describe expected signs and symptoms of • Obtain family/surrogate feedback • NA
impending death to family and loved ones regarding clinic involvement in patient’s
end-of-life care
Abbreviation: NA, not applicable.

*As an example, the simpler version of this service item, “Discuss potential cost to patient/family of any potential treatment” without the italicized words was
rated as an ‘Include’ item. Only ‘Included’ items qualified as part of the consensus definition for high-quality primary palliative care in medical oncology practice.
Table 2. Palliative Care Service Items by Symptom Category in the Symptom Assessment and Management Domain, Rank
Order by Percentage of Service Items With an Include Composite Rating
Composite Rating Category, Row %
(No. of patients)
Symptom Category Service Items Include Uncertain
Chemotherapy-related toxicity 6 100 (6) 0 (0)
Nausea/vomiting (not on chemotherapy) 7 100 (7) 0 (0)
Diarrhea 11 100 (11) 0 (0)
Dyspnea 14 93 (13) 7 (1)

Cough 25 92 (23) 8 (2)
Fatigue 12 92 (11) 8 (1)

Pruritus/rash 12 92 (11) 8 (1)
Mucositis/dysphagia 19 89 (17) 11 (2)
Cachexia/weight loss 13 85 (11) 15 (2)
Nausea/vomiting (on chemotherapy)* 16 75 (12) 25 (4)
Constipation/ileus/obstruction 12 67 (8) 33 (4)
Ascites 6 67 (4) 33 (2)
Pain* 58 66 (38) 33 (19)
Delirium 14 64 (9) 36 (5)
Lymphedema 11 64 (7) 36 (4)
Insomnia 13 62 (8) 38 (5)
General symptoms* 19 58 (11) 42 (8)
Genitourinary symptoms 23 57 (13) 43 (10)
General patient function* 31 48 (15) 52 (16)
Depression 27 41 (11) 59 (16)
Anxiety 20 30 (6) 70 (14)
General depression/anxiety* 22 23 (5) 73 (16)
Totals 391 66 (257) 33 (132)
NOTE: Table does not include the four service items describing Evaluation of Clinic Processes for this domain, or the two items in the Exclude category, one each in
Pain and in General Depression/Anxiety. Only items in the Include category are part of the consensus definition of high-quality primary palliative care in medical
oncology practice.
*Category included duplicate service items with varying implementation, such as methods of assessment or frequency (eg, every visit v every 3 months).
management for common symptoms such as nausea, vomiting, Domain 2: Psychosocial Assessment and
diarrhea, dyspnea, and pain. Patients with uncontrolled/poorly Management
controlled symptoms should be referred to specialist palliative Panelists agreed that practices should conduct at minimum an
care or other specialty as indicated. However, during discussion, initial, basic psychosocial assessment and a distress assess-
panelists commented that referral is often limited by availability ment. Distress should also be systematically assessed with a
of specialist providers. validated quantitative instrument after any clinical change (eg,
Bickel et al
new areas of metastatic disease). Panelists agreed that distress and documented for all patients as soon as possible. However,
should be managed at a basic level with supportive, empathetic as discussed by the panel, completing all aspects of advance
statements and validation of the patient’s experience. Oth- care planning may be complicated by patient/family avoid-
erwise, patients should be referred. ance, patient illness, lack of time during a regular outpatient
clinic visit, and shortage of needed support staff.
Domain 3: Spiritual and Cultural Assessment and
Management Domain 6: Coordination and Continuity of Care
Although only two spiritual assessment items (documentation Panelists registered strong agreement (Include) for care co-
of a patient’s faith and differentiation of a grief reaction from ordination with primary care, hospice, hospital, and nursing
depression) were rated as Include, multiple basic spiritual home, but were Uncertain about having clinic protocols for
support elements were rated as Include, such as providing referring back to primary care or tracking utilization (emer-
patients with a framework to consider their goals and hopes gency clinic visits, emergency room visits, or hospitalizations).
along with the likely medical outcome(s) of their illnesses and
supporting those goals. During discussion, panelists en- Domain 7: Appropriate Palliative Care and Hospice
couraged more frequent referrals to outside spiritual providers Referral
(because they may be underutilized). Culturally, preferences Oncology practices should describe the difference between
for communication and language should be assessed and hospice and palliative care, with the benefits and limitations of
documented, and at the minimum, telephone translation each, to patients and families as soon as possible after an
services should be provided. advanced cancer diagnosis. Routine patient assessments
should be conducted to determine need for palliative care or
Domain 4: Communication and Shared Decision hospice referral. Although rated as Uncertain, during dis-
Making and Domain 5: Advance Care Planning cussion panelists thought that ideally, practices would have
Panelists endorsed most of the service items in these domains. protocols to facilitate these assessments, and that practices
Patients and families should be assessed for preferences re- would maintain rosters of patients receiving palliative/comfort
garding (1) how they want to receive information regarding the care and hospice care for purposes of improvement and
patient’s cancer, prognosis, treatment risks/benefits, treat- outcomes tracking. There was strong consensus (Include) that
ment plan, and bad news; and (2) who participates in the patients with a prognosis of 3 months or less and/or an Eastern
decision making and to what extent. Oncology practices Cooperative Oncology Group performance status of three to
should provide oral and written documentation of the four be referred for hospice and that referrals be collaboratively
treatment plan to the patient and family with specific details agreed upon between the patient/family and the oncology
regarding (1) expectations for disease control, (2) expected team. However, during discussion, panelists acknowledged the
effects on symptoms and quality of life, (3) expected length patient-centered exceptions to these and other service items,
and frequency of treatment, and (4) the frequency of and advocating benchmarking over absolute measurement.
rationale for disease reassessment. The patient’s and family’s
understanding of the patient’s illness, prognosis, and goals of Domain 8: Carer Support
care should be assessed at diagnosis, at disease progression, The term “carer” was chosen to encompass all people caring for
and with changes in the treatment plan. Mistakes should be the patient—both the patient’s caregivers (family and loved
openly acknowledged and addressed as soon as they are ones) and oncology clinic staff. Panelists agreed that practices
noticed. should obtain permission to speak with primary caregiver(s)
The process of advance care planning in this patient and to include them in conversations about the patient’s care.
population should begin at the diagnosis of advanced cancer, Caregivers attending clinic visits with patients should be
and should start with assessing the patient’s and family’s assessed for distress at least once. Caregivers should know how
readiness to discuss advance care planning and any concerns to contact the clinic in both routine and emergency situations,
they might have. Panelists agreed that code status, living wills, and they should have information about local and online
advanced directives, health care surrogate, and out of hospital caregiver resources. Other than assisting with Family Medical
“do not resuscitate” orders should be discussed, completed, Leave Act paperwork (Include), most caregiver needs are likely
met by referrals to other providers (eg, social worker, counselor, service items in the Include category herein and measures in
or their own physicians). Bereaved caregivers should get a the American Board of Internal Medicine Palliative Care for
phone call and/or condolence card from the clinic and receive Primary Care and Subspecialist Physicians Practice Im-
information regarding local bereavement resources. To care for provement Module,25 which is also intended to improve
staff, the clinic environment should be supportive and allow for primary palliative care delivery.
open communication, respect, growth, and self-care. Rather than devaluing the importance or need for specialist
palliative medicine, our findings reiterate that primary palli-
Domain 9: End-of-Life Care ative care skills, such as symptom assessment and manage-
The panel endorsed the majority of these service items as being ment, with honest and compassionate communication about
important, feasible, and within the scope of medical oncology treatment options and their limits in advanced disease,26 have
practice. Practices should have processes to evaluate patient been and continue to be essential for all clinicians caring for
symptoms, advise medication changes to patients and family, seriously ill patients. ASCO embraces the need for palliative
and provide on-call coverage 24 hours per day, 7 days per week care to be “emphasized in oncology training, certification, and
whether hospice is involved or not. For patients on hospice, continuing medical education,”14 and a framework for the
practices should collaborate with the hospice team for ques- delivery of primary versus specialist palliative care has been
tions and issues. proposed.17 Separate work has identified potential indicators
for palliative care and oncology integration.27,28 However, our
DISCUSSION work offers more granular guidance regarding discrete ele-
Comprehensive palliative care assessment and management ments of primary palliative care within medical oncology
encompasses a large breadth and depth of services for patients practice itself, which was previously lacking.
and their families. Using the three constructs of importance, Despite purposeful inclusion of complex care elements
feasibility, and scope of practice, an interdisciplinary panel of considered by our steering group members to be within the
medical oncology practice stakeholders endorsed 62% of the realm of specialist palliative medicine, only 2% of service items
966 palliative care service items as being reasonably within the were in the Exclude category. Many of these service items were
scope of medical oncology practice (the Include composite excluded because of frequency, eg, advance care planning was
rating). These items in the Include category (Data Supplement) endorsed but not “at every visit.” Despite the panel’s size and a
represent our consensus definition of high-quality primary rigorous attempt to compose a representative panel, a high
palliative care within medical oncology practice. The highest proportion of physician panelists self-identified as both
proportions were in the domains of End-of-Life Care, Com- medical oncologists and palliative care physicians. These
munication and Shared Decision Making, and Advance Care panelists may have been biased toward providing more pal-
Planning. Panelists were less certain about service items within liative care services than the average oncologist, making it
the Psychosocial and Spiritual care domains, but did support more difficult to completely exclude certain service items and
basic supportive service items, such as maximizing patient creating a larger Uncertain category. However, only com-
independence and patient autonomy whenever possible. In the prising approximately one third of the panel, this group likely
largest domain, Symptom Assessment and Management, there had less influence over the Include category (the primary focus
was consensus that all symptoms should be assessed and of this guidance statement) because it required a median rating
managed at a basic level, with more comprehensive man- of 7 to 9 without disagreement in all three constructs.
agement for common symptoms such as nausea, vomiting, Our findings are also limited because we did not ask the
diarrhea, dyspnea, and pain. panel to endorse any specific standardized tools (such as “The
The panel’s recommendations corroborate prior studies Distress Thermometer”29) to specify which individual(s)
illustrating that medical oncologists consider palliative care within medical oncology practice should provide each service
services to be within the scope of quality medical oncology item, prioritize areas for improvement, or suggest perfor-
practice13,20 and use primary palliative care skills.19,24 Thus, it mance benchmarks, because adding these topics would have
is not surprising that the panel endorsed many basic palliative required more resources. Some service items could have
care service items, comprising a large proportion of the In- arguably been placed in a different domain, altering our
clude category. Indeed, there is a large overlap between the summative findings, but the rating for each item remains the
Bickel et al
same regardless of domain (eg, having bereavement items in priorities for improvement, validated quality metrics, and
the Carer Support domain rather than the End-of-Life Care benchmark goals. Such efforts need to be coupled with the
domain). The service items are intended to be generally identification of appropriate reimbursement models to
representative; not every possibility was considered. Lastly, facilitate provision of high-quality palliative care for pa-
with only US-based panelists, our findings cannot be gen- tients with cancer.
eralized elsewhere, and they are subject to change as practice In summary, this statement represents a rigorous con-
patterns and evidence evolve. sensus definition reached by an interdisciplinary panel of
One of the main project goals was to create an actionable medical oncology and palliative care experts regarding what
resource by outlining the elements of high-quality primary elements of palliative care constitute high-quality primary
palliative care within the context of medical oncology palliative care delivery by medical oncology practices for adult
practice. Some improvement and educational resources patients with advanced cancer or high symptom burden in the
exist (Data Supplement), but have not been incorporated United States at this time (Fig 1). However, it is neither a
into routine care by many medical oncology practices for clinical practice guideline nor a set of standards, because the
various reasons,30 including lack of training and unclear evidence base is yet lacking for the creation of such a directive,
level of responsibility.31 Improvement is difficult without and no benchmarks or mandates have been proposed in this
clear definitions. The granularity of these recommen- statement. Our findings demonstrate that primary palliative
dations allows interested medical oncology practices to care skills are endorsed within medical oncology practice,
consider incorporating some of these service items as recognizing that, despite variation in practice settings and
internal process goals and begin closing local gaps in end- resources, medical oncology practices shoulder significant
of-life care. We acknowledge that although some service responsibility for delivering primary palliative care. Having
items are already routine, others are more aspirational, specialist palliative care teams provide all palliative care is not
especially given the limitations of the current patient care feasible in most cases.16 However, with appropriate education,
systems in which many medical oncology practices exist. evaluation, and reimbursement models, this statement can
However, compared with the service items in the Un- guide the medical oncology community toward operation-
certain category, our panelists believed that many of the alizing and improving primary palliative care delivery in
service items in the Include category were achievable, medical oncology practice.
low-hanging fruit.
Acknowledgment
This statement acknowledges the wide range of medical Supported by the Conquer Cancer Foundation. K.E.B. received salary support as
oncology practice settings and resources. Its intent is to allow an Advanced Geriatrics Research Fellow and Veterans Affairs Quality Scholar
through the Department of Veterans Affairs Office of Academic Affiliations. The
practices flexibility in choosing improvement areas based on
views expressed in this publication do not necessarily reflect the views of the
local context, feasibility, and interest; as such, one area has not United States Department of Veterans Affairs or the United States government.
been prioritized over others. Practices strong in some areas,
Authors’ Disclosures of Potential Conflicts of Interest
such as specialty tumor-based clinics, may already provide Disclosures provided by the authors are available with this article at
service items in the Uncertain category that are in their areas of jop.ascopubs.org.
strength. Although the scope of this work was limited to
Author Contributions
medical oncology practice, palliative care issues are cross- Conception and design: Kathleen E. Bickel, Kristen McNiff, Mary K. Buss,
cutting, and other oncology disciplines may also find this Arif Kamal, Dale Lupu, Amy P. Abernethy, Charles L. Shapiro, Anupama
Kurup Acheson, Jennifer Malin, Tracey Evans, Monika K. Krzyzanowska
statement relevant. Meanwhile, specialist palliative care teams
Administrative support: Dale Lupu
may find this statement useful as they work to build effective Collection and assembly of data: Kathleen E. Bickel, Kristen McNiff, Mary
collaborations with oncology, offering their services as a re- K. Buss, Arif Kamal, Dale Lupu, Amy P. Abernethy, Charles L. Shapiro,
Anupama Kurup Acheson, Jennifer Malin, Tracey Evans, Monika K.
source for clinical expertise and education regarding primary Krzyzanowska
palliative care. Data analysis and interpretation: All authors
Manuscript writing: All authors
Further research could address current literature
Final approval of manuscript: All authors
gaps,10 including better methods to identify the palliative
Corresponding author: Kathleen E. Bickel, MD, MPhil, White River Junction VA
care needs of patients with cancer and their families, how Medical Center, 215 N Main St, Mail Code GEC 003, White River Junction, VT
best to standardize palliative care delivery in oncology, 05091; e-mail: kathleen.bickel@outlook.com.
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Bickel et al
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and
Palliative Medicine Guidance Statement
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are
self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more
information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or jop.ascopubs.org/site/misc/ifc.xhtml.
Kathleen E. Bickel Charles L. Shapiro

No relationship to disclose No relationship to disclose
Kristen McNiff Anupama Kurup Acheson
No relationship to disclose No relationship to disclose
Mary K. Buss Jennifer Malin

No relationship to disclose Employment: Anthem
Stock or Other Ownership: Anthem
Arif Kamal
Consulting or Advisory Role: Insys Therapeutics Tracey Evans

Honoraria: Genentech, Genentech (I), Celgene
Dale Lupu Consulting or Advisory Role: Genentech, Celgene, Genentech (I)
Other Relationship: AAHPM, Coalition for Supportive Care of Kidney Speakers’ Bureau: Genentech (I)
Patients
Travel, Accommodations, Expenses: Genentech, Celgene, Genentech (I)
Amy P. Abernethy Monika K. Krzyzanowska
Employment: Flatiron Health, AthenaHealth, Orange Leaf Associates
Honoraria: Eisai, Bayer
Stock or Other Ownership: AthenaHealth, Flatiron Health Research Funding: AstraZeneca (Inst), Eisai (Inst), Exelixis (Inst), Novartis
Consulting or Advisory Role: Bristol-Myers Squibb, Helsinn (Inst)
Therapeutics, Genentech
Michael S. Broder
Other Relationship: Partnership for Health Analytic Research; Amgen;
Bristol-Myers Squibb; Boston Scientific; Celgene; Eisai; Ethicon;
Genentech; Jazz Pharmaceuticals; Novartis; Otsuka; Roche

Bickel Et Al 2016 Defining High Quality Palliative Care in Oncology Practice An American Society of Clinical Oncology

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Original Contribution CARE DELIVERY

Cancer Institute; Beth Israel Deaconess

Defining High-Quality Palliative

cologists and their clinic teams remain the primary pro-

Primary Palliative Care in Medical Oncology Delphi Panelists

Percentage of Palliative Care Service Items (per domain)

End-of-Life Care 81%

Communication and 79%

Appropriate Palliative 69%

Care and Hospice Referral 24%

Symptom Assessment 65%

Coordination and 48%

Psychosocial Assessment 39%

Assessment/ if any, in medical record issues regarding clinic process of

Abbreviation: NA, not applicable.

Symptom Category Service Items Include Uncertain

Chemotherapy-related toxicity 6 100 (6) 0 (0)

Nausea/vomiting (not on chemotherapy) 7 100 (7) 0 (0)

Diarrhea 11 100 (11) 0 (0)

Dyspnea 14 93 (13) 7 (1)

Cough 25 92 (23) 8 (2)

Fatigue 12 92 (11) 8 (1)

Pruritus/rash 12 92 (11) 8 (1)

Mucositis/dysphagia 19 89 (17) 11 (2)

Cachexia/weight loss 13 85 (11) 15 (2)

Nausea/vomiting (on chemotherapy)* 16 75 (12) 25 (4)

Constipation/ileus/obstruction 12 67 (8) 33 (4)

Ascites 6 67 (4) 33 (2)

Pain* 58 66 (38) 33 (19)

Delirium 14 64 (9) 36 (5)

Lymphedema 11 64 (7) 36 (4)

Insomnia 13 62 (8) 38 (5)

General symptoms* 19 58 (11) 42 (8)

Genitourinary symptoms 23 57 (13) 43 (10)

General patient function* 31 48 (15) 52 (16)

Depression 27 41 (11) 59 (16)

Anxiety 20 30 (6) 70 (14)

General depression/anxiety* 22 23 (5) 73 (16)

Totals 391 66 (257) 33 (132)

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Kathleen E. Bickel Charles L. Shapiro

Mary K. Buss Jennifer Malin

Consulting or Advisory Role: Insys Therapeutics Tracey Evans

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